Lymphedema Advocacy Days Brings Patients and Providers to D.C.

Posted on in HME Government Issues

By Collin Brecher, VGM Government Relations

Dozens of patients, providers, and industry leaders met in Washington, D.C., to advocate for support of the Lymphedema Treatment Act (LTA). Nikki Jensen, membership director for Essentially Women, and Collin Brecher of VGM Government Relations, along with Sophia Hanson and Melvin Osburn, both of whom have been diagnosed with primary lymphedema, represented the Iowa and Illinois delegations. The event is organized and hosted by the Lymphedema Treatment Act Organization.

 Josie Villanueva (second from right), health legislative assistant to Sen. Tammy Duckworth (D-Ill.), meets with
(l to r) Essentially Women's Nikki Jensen, VGM's Collin Brecher, Sophia Hanson, and Melvin Osburn.

The LTA is legislation that will categorize compression garments – the first line of defense to control lymphedema – as durable medical equipment. In order to meet the definition of DME by the Centers for Medicare and Medicaid Services (CMS), equipment must last at least two years. Compression therapy is critical to lymphedema patients. After daily use, the integrity of the fabric eventually breaks down. This means garments need to be replaced every six months, excluding them from the current definition of DME.

Compression garments assist in the prevention of fluid, bacteria, and nutrient buildup in affected limbs. Without compression therapy, extreme swelling will result. Patients with untreated lymphedema are at high risk of developing complications such as cellulitis, a skin infection that is difficult to control in lymphedema patients due to the nutrient-rich fluid in their affected limbs. Patient advocate Osburn was properly diagnosed with primary lymphedema in 2012 and has not been admitted into the hospital since being prescribed his compression garments.

 (l to r) Collin Brecher, Nikki Jensen, Sophia Hanson, and Melvin Osburn meet with Rep. Adam Kinzinger's (R-Ill.) staff member Dan Granfield and office "guard dog" Maggie.

The Iowa-Illinois group met with staff members from nearly 20 congressional offices to gather support for LTA. Staff members seemed extremely receptive and interested in learning more about lymphedema. Several offices have committed to co-sponsoring the legislation again. The legislation was introduced but not passed during last year’s congressional session, although yielding 291 cosponsors between both chambers. Only weeks after its introduction during this session of Congress, the legislation has already gained broad bipartisan support.

“This is my second time advocating for lymphedema,” said Jensen. “It’s such a motivating experience to advocate for legislation that will improve so many people’s quality of life. The LTA will have a profound impact on the access to care needed for lymphedema patients across the country.”

 Collin Brecher and Nikki Jensen meet with Essentially Women member Jeri Millard from In The Pink in Jacksonville Beach, Florida, and Kim Neel from Alala in Columbia, South Carolina, who attended the two-day event in Washington to meet with their prospective delegations.

Visit the VGM Action Center to learn more about the LTA and to send a letter to your member of Congress today in support of this important piece of legislation.